Hi everybody! I’m having surgery on Monday with Dr. Samji here in San Jose, and I just wanted to thank everyone on the forum! I’m very grateful to have found Dr. Samji and feel I’m in experienced hands. I was so scared when I got the diagnosis…as you all know, Eagles really affects your life and well-being…I’m a professional singer and it’s taken a lot of my voice away from me. I’m so ready to get it back and praying that the surgery is successful and no complications.
I’ll write an update with how I’m doing after my surgery! I’m so grateful for this forum and all of the research and information I was able to gather from everyone’s posts. I have no idea what I would have ended up doing if it weren’t for all the valuable info and anecdotes here.
Thanks & here’s hoping for a successful surgery!! I’m scared but looking forward to being done with this!
If anyone has any last minute tips or advice from their experience with Dr Samji & recovery, I’m all ears
I’m so glad your surgery is soon. Dr. Samji will do a great job for you. He is a meticulous surgeon. I expect good results from your surgery but remember, it may be awhile before all those irritated nerves heal up & things return to more normal for you.
Re: recovery - Your first week will be the worst pain-wise though some people don’t have a lot of post op pain. Days 3-5 after surgery is when the swelling is the worst. Dr. Samji puts that info in the post op info he gives you. It’s very important to stay on top of the pain w/ ice, steroids & pain meds during this time (i.e. don’t decide this is the time to start weaning off pain meds…I did that & pain won. I spent 2 days on my couch trying to get back on top of it…). Make sure you’re set w/ a laxative & stool softener to counter the side effects of the pain meds. I used CALM (magnesium citrate) because it comes in a powdered form & I could mix it as strong or weak as I felt necessary. Mag citrate also comes in OTC capsular form & can be purchased at any drug store.
Keep your head elevated to at least 30º for the first week post op & perhaps longer. I needed to do this for 6 weeks but others far less time. It’s hard to sleep nearly sitting up but makes a big difference in helping reduce swelling. Ice 15-20 min on & at least 45 min. off over the course of each day.
Eating can be challenging at first because the breathing tube can leave you w/ a sore throat & surgery can leave your jaw joint(s) stiff. Be prepared w/ soft foods you like - yogurt, pudding, soup, mashed potatoes, applesauce, fruit & veggie smoothies w/ protein powder, etc. I was on a soft diet for 2-3 weeks after my first surgery but able to eat normally immediately after my second one. Hard to know why there was this difference.
I don’t know that I’ve offered you any info you don’t already have, but seeing it again, can’t hurt.
So pleased that you’re getting surgery done! Can’t really add anything in the way of tips- I think Isaiah’s covered it well! But hope that it goes well & that you soon see an improvement in symptoms, look forward to hearing from you afterwards! Will be praying for you, God Bless
I am also having surgery on Monday with Dr. Samji. Left side styloidectomy. He’s a busy man! I am prepared with pain meds, colace for the pain med constipation, soft foods and surgical pillow. I think I have all my bases covered. I will be doing my right side as well with Dr. Samji in 3-5 months post op from this one. I’m ready to be feeling pain free. Most of my symptoms are nerve related except for the stabbing pain in the back of the mouth. Chest pain mostly, under the breast and first rib pain, ear feels full and my stomach is always upside down and infrequent headaches. So far the right side is infrequent to all of the same symptoms.
Will pray for you too, hope that all goes well! Nice to think you’re going though the same thing the same time as another member, you might be in recovery beds next to each other!
God bless, & let us know how you get on!
I hope your surgery went well, ESinLV. It sounds like you’re in good shape for post op recovery. Ice is also a very important tool for helping reduce post op swelling. Gel ice packs work great. I assume you have a couple so you can rotate them. I know Dr. Samji suggests these in his post op info sheets.
We look forward to hearing from you as soon as you feel like updating us. So glad your first surgery is behind you.
Recovery is going well. I had a lot of pain after surgery but that’s normal and expected. I do not do well with anesthesia or pain medication they make me very nauseous so day 2 I’m substituting the Percocet with Tramadol. Keeping up on icing it about 15 min every hour or so. I do have gel packs that I’m rotating with. Funny I am having more concern with removing the bandage than anything else at the moment. It’s tight and causes pulling on the incision, I want to take it off but I don’t want more pain. Ugh! The soreness I have in my throat I think is from the bone not being there anymore, it’s tight when I swallow and my jaw is sore but I’m in good spirits and happy that I am in recovery pain and not the pain I was in before. I would highly recommend Dr. Samji to anyone with this condition, he’s a great surgeon! The Silicon Valley surgery center was top notch and the staff was amazing. Overall my experience has been good, I am felling very blessed to have been treated so well.
So great you’re able to give us an update so soon after your surgery! The sore jaw & throat can be a result of the breathing tube & having your mouth held open throughout the surgery. Many people experience both of these things for awhile post op. I recall my sore throat went away by the end of the first week, but my jaw was stiff & tight for several weeks.
Good job staying with the icing. Using the pain meds you know work best for you is a good idea. Tramadol will do as well as Percocet. Just remember it will take a month or more for your body to recover from this surgery. Taking it really easy for at least 2 weeks post op is critical & beyond that listening to your body & not pushing yourself when you feel pain or fatigue will help a lot with quicker healing. Symptoms may come & go for months as nerves heal. Since you have bilateral ES, you may notice symptoms from the remaining side ramping up since one styloid is now gone. This is also normal.
I agree with your recommendation of Dr. Samji. I had the same good experience w/ him twice. Again, it’s so good to hear you’re doing well.
ESinLV - glad to hear your recovery is going well and you are trying to stay ahead of the pain. Very interested to hear about you and jessicarae’s post surgery progress. Lately my symptoms have been similar to yours, I can feel it poking my throat in the back of my tongue and it is absolutely horrible. Glad you aren’t feeling it there any longer and happy you are on the path to recovery :-).
Not yet, but I do have a consult with Dr. Samji coming up very soon - I cannot wait. I also contacted Dr. Cognetti’s office since he is closer to me but he is scheduling out much further than Dr. Samji unfortunately.
Hi jessica,
Good luck on your surgery. Dr Samji did my 1st side at the end of April and I have the 2nd side scheduled for early December. I had a very good experience with him and the surgery center. As suggested, ice, ice and ice. Have a wedge pillow. I borrowed one and also had another u shaped pillow on top of that that I absolutely love and still using as it keeps my neck more stable and prevents my shoulders from being scrunched since I am a side sleeper.
Generally I wasnt in a whole lot of pain after surgery except a spot on my jaw. The usual difficulty with opening mouth and some minor 1st bite stuff for a couple weeks which subsided. The first 2 days I took my pain meds every 4-6 hours to stay on top of any pain but by day 3, I didn’t take one till late in the day and that is all I needed. The incision site was pretty numb with very little pain. Im almost 5 mths out and still have some numbness but it has taken a long time to subside. It was a piece of cake and I was out taking short walks the day after surgery.
Dr Samji warned me that my TMJ symptoms would likely kick up after surgery and they did with a vegence. I have been struggling with the jaw pain and up into the temporalis muscle group and tight masseter. I was having alot of pain before surgery though and it was only partially under control prior to surgery. I have been getting some injections (botox, sterioids, & nerve block) and acupuncture as well as massage. Its been a slow recovery for that part and I am going in today for more botox to relax these muscles. It is better though.I suggest massaging the scar tissue when you feel up to digging in there.
Ive hestitated to schedule my other side because of the ongoing jaw pain but now that it is under better control, Im doing the other side. Since that side is not so problematic in the jaw, I am hoping recovery will be easier the 2nd time around.
Dr Samji is great. Ive had a lot of surgeries and this was one of the easier ones and I felt very confident in his skills. When they wheeled me and starting giving me drugs in IV, I recall him coming in and giving everyone the run down on who was to do what. After a minute, I though he had left the room, I said is he a drill sargent when it comes to surgeries? They all laughed and one whispered that he was still in the room. The I went off into lala land. You are in good hands. Best of luck!
Oh I also found mashed potatoes and mac & cheese easy to eat. Also Jimmy Dean breakfast bowls. All microwavable. Not the healthiest but it tasted good and helped settle my stomach from the meds.
Hello everyone!
I am happy to report that I am recovering extremely well. Ice is definitely my good close friend. I think I am icing every couple hours for a good 30-45 min at a time. I have physical bruising along my throat and upper chest area that’s already starting to yellow and fade. I have very little to no pain at all. I’ve been only taking 50mg of Tramadol twice a day and before day 4 an additional 2 Tylenol in between doses of Tramadol. Today would be my first day with only one dose of the Tramadol. First bite syndrome started a couple days ago and today my brain decided to work and remind myself “hey, you’re a massage therapist. Why are you not massaging the jaw line and mandible to get this out?” So I did and I feel so much better! By dinner this evening I was able to eat with very little tingling sensations. Sleeping upright has to be the hardest out of all of this, my neck and shoulders are sore come morning and I don’t sleep very well throughout the night but I am still so grateful that I’m not in the pain I was in prior to surgery so anything else I have to deal with is worth it 1000%. I feel very blessed to have so many people sending me love and healing energies during my procedure and after that l. I truly believe I am healing faster than normal because of it. Anesthesia is a horrible thing and my body doesn’t react well to it or narcotics so it’s taking me a while longer to get my strength back and I’m moving rather slowly. That’s a lot for me because I am on the go 14 hours a day 6 days a week on the regular with work and family orientated activities. This is my surgery vacation! Haha I am feeling fantastic with a regular heart rate, no chest pains, and no stabbing pain in the back of my throat! Dr. Samji is a fantastic surgeon, I feel inclined to create something special for him in my art studio which when I get my strength back I am sure I will. He did tell me that more than likely I will have to do the right side, I of course need time. One to commit to doing this again and two saving the money to do so as my insurance doesn’t cover surgical costs only medical. I would highly recommend Dr. Samji to anyone who needs this procedure done. Even if it’s a longer wait than any other doctor. Thank you to everyone here on this site for all the support and compassion you offer! As a rare Syndrome community we all need it! I will continue to support others and remain a part of sending my healing energies to all who come here for support.
I am feeling fantastic with a regular heart rate, no chest pains, and no stabbing pain in the back of my throat! Dr. Samji is a fantastic surgeon, I feel inclined to create something special for him in my art studio which when I get my strength back I am sure I will. He did tell me that more than likely I will have to do the right side, I of course need time. One to commit to doing this again and two saving the money to do so as my insurance doesn’t cover surgical costs only medical. I would highly recommend Dr. Samji to anyone who needs this procedure done. Even if it’s a longer wait than any other doctor. Thank you to everyone here on this site for all the support and compassion you offer! As a rare Syndrome community we all need it! I will continue to support others and remain a part of sending my healing energies to all who come here for support. 
